Parents Speak Out About Losing Their Twin Boys to the Same Cancer Months Apart

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Few things are more heartbreaking than losing a loved one, but dealing with the death of a child is especially crushing. Sadly, Will and Natalie Decker have experienced this pain not just once but twice — first when they lost their 3-year-old son Joel in November 2017 from acute myeloid leukemia, and again just 18 months later when his twin brother, Seth, died in May 2019 from the same disease. The parents are sharing their story in hopes that their loss can help raise awareness and find a cure for the cancer that took their sons' lives.

Natalie still remembers the exact moment she realized something wasn't quite right with her twins.

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Speaking with People, the 39-year-old mom of three said that before her sons' diagnosis, her house was filled with “wonderful chaos.” When the twins were born in 2014, her eldest son Nathanial was almost 5, but the parents “enjoyed every minute of having three boys in the house," from the laughter and the noise to "how much they loved each other." 

"We just had fun together," Natalie shared.

“Joel was outgoing and a little bit mischievous and Seth was a little bit more quiet and sensitive,” she said. “They were always together and they had a very strong and close bond.”

But one day in 2016, the mom noticed “small purple dots" all over Seth’s torso. The boys had just turned 2, and it was unusual. When Natalie took him to the doctor, the pediatrician told her Seth's rash could be petechiae, which might be a sign of low platelets.

Blood work was ordered, and before long, the results confirmed the doctor's suspicions.

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Seth began seeing a hematologist, but not long after his diagnosis, the Deckers made an alarming discovery: Joel had the same dots over his body that his brother did. Together, the boys began seeing the specialist regularly, in hopes of bringing their levels back up.

As months went by, the Deckers began to feel helpless as they watched their sons grow sicker, despite doing everything they could to make them better.

“Seth just wasn’t feeling well," Natalie recalled. "I could tell something was wrong throughout that fall. … He couldn’t walk. He was having so much pain."

In November 2016, Seth's doctor began to suspect he had a tumor.

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After a round of testing, it was finally determined that Seth had myeloid sarcoma, a rare form of acute myeloid leukemia. It's is a cancer of the blood cells that affects red blood cells, platelet-forming cells, and other types of white blood cells, according to the St. Baldrick's Foundation. 

Research conducted by the National Cancer Institute showed that having a brother or sister with leukemia — and especially a twin — increases a person's risk of being diagnosed with the disease. That meant that Joel would also have to get tested.

"We had already known that it was very likely that Joel was going to get sick,” Will told People. “For us, it was kind of a matter of not if, but when.”

Seth quickly began treatment, and for a short spell of time, the Deckers had high hopes that Joel wouldn't face the same diagnosis as his brother.

But in March 2017, Joel started to feel sick again, and a biopsy revealed more terrible news.

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At first, Nathalie couldn't tell what was happening to her once-energetic boy.

“Seth and I had been in the hospital for months and Joel was going up to Texas Children’s Hospital once a week to get platelets, so it was hard to tell if he was upset from the stress of everything,” Natalie shared. “But finally I was like, ‘He’s in pain. I don’t think he’s feeling well.'”

A bone marrow biopsy confirmed Joel had leukemia in his bone marrow. The news was especially heartbreaking because the parents had worked tirelessly to get their son a bone marrow transplant before he became too sick. But according to Will, things couldn't get lined up in time for it to work out.

Seth, however, was about to undergo his own bone marrow transplant, and was receiving high-dose chemotherapy.

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At that point, doctors told Natalie that if all went well, Seth would finally be able to go home. 

“We had kind of been working toward this — [that] we might all be home together,” the mom recalled. “And then when Joel was diagnosed, we had to start all over. … Having a second child diagnosed with cancer was really devastating and I felt bad that I couldn’t be there with both of them.”

This meant that Natalie and Will would have to split up to care for both boys. In the meantime, Natalie's mom often looked after their older son back at home.

"AML requires month-long hospital stays at a time (or longer) because the chemo is so devastating to the body and wipes out immunity, drastically increasing susceptibility to infection," explained the twins' fundraising page for St. Baldrick's Foundation. "For almost a year, either Seth or Joel was hospitalized most of the time and we only enjoyed a few weeks where everyone was home together. "

For a year, the brothers were separated by one floor of the hospital -- Seth was on the bone marrow floor, and Joel was on the cancer floor.

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As for Natalie and Will, they rarely switched caretaker roles and would spend weeks apart from each other.

“We switched back and forth a little bit for breaks, but it’s too hard to do it,” Natalie explained to People. “We couldn’t split 50/50 because you miss too much of what’s going on with either Seth’s care or Joel’s care. There’s not enough continuity if we’re just bouncing back and forth.”

Luckily, Seth and Joel were none the wiser about the seriousness of their situation.

“They were just so strong and brave during everything,” she continued. “No matter how much pain they were in or how bad they felt, they just had such great attitudes about it. They smiled every day.”

“I don’t think they understood the extent of what was happening,” she added. “To them, it just became kind of their normal life. Like they just knew, ‘I have to.'”

Both boys returned home in April 2017. Seth had finally gotten his bone marrow transplant, and Joel had finished his first round of chemo.

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Joel started his second round of chemo in May and received a bone marrow transplant in June 2017. Unfortunately, in August, Joel relapsed.

“It was just a struggle to try and get him comfortable and do what we could to try and stop the leukemia,” Natalie explained. “We just didn’t have a lot of options at that point.”

Will said that Joel had started to gain water weight and became less and less mobile. 

“Basically he got too much fluid in his system that he had to go to ICU," his dad recalled.

For the next two weeks, Joel was placed on a respirator in the intensive care unit, but he wasn't improving.

On November 1, 2017, Will and Natalie brought Nathaniel to see his little brother one last time.

"He started crying, but after that … Nathaniel was amazing,” the mom remembered. “He sat in the bed and he stroked Joel’s hand and head and talked to him … he just loved on Joel, the little bit [of time] that we had with him.”

Meanwhile, Seth refused to go into the private room where his brother was slowly dying — afraid of both the ventilator and its noise.

“He was there, but he did not want to come in the room,” Natalie recalled. “I think he sensed something was happening but was not able to understand all of it.”

An hour and a half after doctors took Joel off his ventilators, the 3-year-old quietly died.

For a short time after Joel's death, it seemed as though Seth might be getting better.

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Will said that Seth had become "more and more active and [was] returning to closer to what a normal child would be."

But things soon took a sharp turn.

Multiple tests and biopsies revealed that Seth need a second bone marrow transplant, which he received in November 2018 from his brother Nathaniel, who was a perfect match.

This time, however, the transplant didn't take as well. Seth experienced several complications, including a graft versus host disease, when the bone marrow attacks the host.

By April 2019, Seth's cancer had come back. This time, they opted to take their son home when it became clear the end was near.

“We knew as fast as everything had happened with Joel, we wanted to spend as much time at home together," Natalie remembered. 

But Seth's rapidly declining health forced the family to bring him back to the hospital, where he died May 10, 2019.

Will and Natalie are sharing their sons' story for a good cause.

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The parents have partnered with St. Baldrick's Foundation to help raise awareness about pediatric cancer, in honor of International Childhood Cancer Day on February 15.

“A number you hear a lot is 4 percent of the NIH, National Institutes of Health Funding, goes to childhood cancer," Will explained. "The rest of it goes to adult cancer funding. We wanted to do something to help make things better for other kids.”

The parents have also established a Hero Fund in honor of their boys, which has raised more than $44,000 in their memory.

Despite all their heartache, the family has managed to find some sense of peace since losing the twins.

“Seth and Joel didn’t focus on their limitations," their mom said. "They just found joy in the little things around them that made them happy. Will, Nathaniel, and I want to try and live our lives that way.”

“So many people get stuck on things that, to us, seem insignificant,” she continued. “Sometimes we laugh if we hear someone complaining about something because Seth and Joel went through so much more and they had such a better attitude. We think about things a lot differently than most other families do. … I feel like it’s really changed our perspective.”